Help until He comes

Today was a busy day in that I was organising aged care help for Chris and I ... we arent coping all that well... lots of phone calls that had me on hold for at least an hour each 

After nearly a whole day on the phone, I am happy to report that we were approved for help. Our aged care home package will start in 3-4 weeks. It includes transport, home maintenance, podiatry, and grass cutting. Later on as we get older it will include meals on wheels... but as long as I can cook, we would prefer our own cuisine. 

I am hoping that God takes us Home soon. That is the best thing to dwell on. But meanwhile, while we wait, my house could do with a deep clean, our toenails are feral and we need them properly done. We cant take a bath and we help each other shower but a grip bar and telephone type shower have been promised to us under home maintenance, and that would stop the suffocation feeling of water pouring over our head when we can't breathe at the best of times.. 

We cant drive most times and we will need transport for a personal consultation with our doctor and the help they offer is needed now.  Nothing to do with lack of faith or not watching- but we have to be practical. 

Heart failure is a beast that stalks us both and is a progressive disease. Peripheral neuropathy in our feet and legs is a constant pain that stops sleep.  A physiotherapist may be able to help or offer exercises to alleviate it.. all things that need attention now. 

Including last but not least, changed bed linen that can be done without banging gnarled fingers and hands... and while we look with anticipation and longing to be Home, the daily necessities of life are calling. 

We rely on God to help us and are grateful that He has blessed us with the help we need...until He comes. Our life style is always if the LORD wills.... we consider ourselves blessed that we are eligible for the help that's come our way, until He comes! God willing, it will be soon. But if not, we will be accepting help to keep going until He comes.

 © Glenys Robyn Hicks

" So teach [us] to number our days, that we may apply [our] hearts unto wisdom" Psalm 90:12

Time on the phone paid off

After nearly a whole day on the phone, I am happy to report that we were approved for help. 

Our aged care home package will start in 3-4 weeks. It includes transport, home maintenance, podiatry, and grass cutting. 

Later on as we get older it will include meals on wheels... but as long as I can cook, we would prefer our own cuisine. 

Once a year someone will come and wash our windows for us. The is all part of the Australian Government's plan to keep seniors in their own home instead of a nursing home.

I had to access three different goverment bodies today via phone with a waiting time of an hour or more, but with the ability to be approved so quickly and for the blessing it will be, the time on  the phone paid off.

 

I can't believe it!

 

The last five days have been a dream come true! I have been sleeping better and I have woken up with spoons!

I have been very careful to keep pacing myself as I don't want to get a rebound flare due to burnout. So far, so good!

It's been about 22 years since I have felt this well. I am very grateful for the respite from pain.

So unusual is this new found energy that sees me operating as a "normal" person, that it feels "abnormal"

But today, I will enjoy this new energy and thank God for it. If it wasn't me I would want to know my secret- no secret.. but in any case, I can't believe it! 

Spoons are a distant memory.

 

Lately I have had a flare of my fibro flare. It's resulted in the most epic fatigue that it seems just breathing is an effort.

It's actually been going on for months. I keep referring to it as a flare, but today I realised it's a flare that never gives up. It's eternal- with no discernable beginnning and no end in sight.

I can sleep for 12 hours and still have no energy. 

We eat good nutrional food. I cook everything from scratch, but the ennui and corporeal exhaustion still remain.

I often think if I just have this or another cup of that, it will help me regain some spoons, but unfortunately nothing seems to help. I never got my first wind, let alone catch my second! 

My doctor is going to run some tests especially focussing on my thyroid and iron levels. I personally don't think it's that. My iron levels have been consistently high and my thyroid level is normal and has responded to my Thyroxine which I take for hypothyroidism. But I will do the tests anyway.

No, I think fibromyalgia is the culprit for my physical exhaustion. It seems now to be a way of life. 

Spoons are a distant memory.

That to me is true love

 

So I have had such a flare up of my fibromyalgia that I went back to bed leaving a kitchen full of dirty dishes. Dishes that sat on my draining boards and in my sink.

I just needed to recoup some spoons and I was hoping to awake with at least enough to clean my kitchen.

You can imagine my joy and surprise when I woke up a few hours later to find that Chris had run the dishwasher and wiped down my kitchen benches! 

Now those of you who suffer from chronic illness, especially fibromyalgia know that we can become victims of the rollercoaster of emotions. Grateful tears ran down my cheeks and I rushed to Chris and hugged him tightly. 

He was surprised at my emotional response to his help, but it wasn't just a helping hand in home duties. It was a feeling of nurture and love. Especially when he is battling with severe health issues himself.

It was an act that solidified our union as a team, our home as important, and his wife as cherished. And this cherished wife was very aware and very encouraged. Why? you ask. 

Because I know exactly how many scarce spoons it took him to do this. And that to me, is true love.

Just living is a physical ordeal.

 

Lately I have been finding it difficult to be joyful. My fibromyalgia doesn't get better, my knees are paining me, my angina's worse and I have had bouts of asthma.

Sitting for long periods hurts my back, and my eyes and face and general skin is dry, but I need to keep the house warm as the cold winter temperatures aggravate everything.

I have tried returning to a more realistic sleeping schedule, but I find even if I go to bed at a reasonable hour, I still wake up a couple of hours later. Then I can't get back to sleep for another 4 or so hours. 

I am tired, people. Tired of all this pain. Trying to keep it all together. Trying to live a "normal" life. I mean taking a shower without assistance or cooking a meal from scratch or hanging out some washing should all be within the bounds of normality for a homemaker. Not so for me.

I wear tiredness like a heavy saggy wet cloak, and I never wake up refreshed. My circadian rhythm is all out of whack and I can't restore it. Through no choice of my own, I have become a night owl.

With Chris being ill with his heart failure, he doesn't sleep well either and sleeps sitting up. He starts off in bed, but graduates to his recliner armchair.

The fluid in his lungs makes him feel like he is drowning, so that necessitates sitting up to sleep. It. is. what. it. is... But I watch him struggling for breath and I feel that I am losing him by degrees...

I have thought about trying to be upbeat and falsely present myself as someone who is coping with all this, but if I did it would be a lie.

So apart from a nana nap later, I am planning to spend some time in prayer and worship. Hopefully, that will give me the strength to emotionally and spiritually rise above the physical ordeal just living creates.

It's a good thing, fibro or not!

 

Chris and I have both had glandular fever which lasted for months. He is being checked for fibromyalgia as he has every indication that he has, even though it is mainly a female disease, it can effect men. Here is an article written by a doctor about that link....

Epstein Barr, the virus responsible for glandular fever or mononucleosis, has been linked to the development of fibromyalgia – a chronic, painful condition of the muscles and connective tissue.

Fibromyalgia sufferers are mainly female and report chronic widespread pain and a heightened and painful response to gentle touch. One of the most important criteria to determine whether or not you may have this disease is significant pain in very specific areas of your body, including:

* Inside of your elbows
* Your collar bones
* Inside of your knees
* Your hips

Usually these locations are symmetrical, so you’ll have pain equally present on both sides of your body. Experiencing significant pain when someone presses on those areas, on both sides, is indicative of this condition.

Other symptoms can include fatigue, sleep disturbance, anxiety, bowel and bladder problems, difficulty swallowing and joint stiffness.

Conventional medicine offers no cure for fibromyalgia, although there are treatments like medication, exercise and behavioral interventions that can reduce symptoms.

The natural approach to treating fibromyalgia is to re-balance the immune system which may have been damaged by the effects of the Epstein Barr virus. It is also vital to relieve symptoms through nutritional intervention, graded exercise, stress management and re-establishing good sleep patterns. Let’s have a look at some of these natural treatments for fibromyalgia:

The mineral magnesium is a natural muscle relaxant that is showing promising effects on the pain of this condition. It should be taken as a powder or capsule along with magnesium-rich foods like fish, avocado, raw nuts and seeds, soybeans, green leafy vegetables, brown rice, apples, apricots and grapefruit.

Malic acid is also often low in sufferers and should be supplemented. Malic acid is found naturally in fruits like apple. It often gives unripe fruit a tart or sour taste.

To help relieve the fatigue seen in fibro and Epstein Barr, vitamin C and the B complex are recommended. Anti-inflammatory foods like fish oil, zinc, ginger, turmeric, pineapple and paw paw can also help.

Restoration of normal sleep patterns is an essential part of the recovery process. Herbs like valerian, skull cap, hops and chamomile are excellent. Epsom salt baths which are naturally high in magnesium should also be taken nightly before bedtime. These baths reduce muscle pain and tension and help ensure a good night’s sleep. Gentle exercise during the day – either a walk, swim or stretching exercises can also help you sleep better at night.

Diet wise, I recommend my Epstein Barr, CFS and fibromyalgia patients follow a low carb, high protein diet based around good quality protein foods and plenty of fresh leafy greens and other vegetables. Sugar, grains and the nightshade family of foods like tomatoes, eggplant, chilli, potatoes and capsicum, should be eliminated as they can trigger pain and soreness in the fibromyalgia patient. Remember too to drink plenty of pure water – at least 2-3 litres a day...... author unknown

I have to add here that I could never drink 2-3 litres of water a day and current medical advice is that we only need about 6 glasses. Too much water intake can cause more problems and we have enough to deal with already. 

We are already both on fluid tablets due to heart failure. But apart from that, we are going to implement some diets changes and other suggestions.

With us both suffering similar pain issues, it is easier to understand each other and offer love and support. Which is a good thing, fibro or not! 

What you see is what you get

 

If I had the opportunity to be Mum to as many dogs and cats as this lady here, I would be a very happy woman.

Dogs and cats have been wonderful companions to me throughout my life and I am hopeful that I will see them again in glory. They have been my friends when I felt all alone and they have also ministered to me when I have been ill or depressed.

They are so loving and non judgmental and I often feel we could learn a lot from them.

Not for the first time, I have thought that I like animals better than people at times. 

Animals are just animals. No pretence, no ulterior motives, what you see is what you get. I just look at this picture and I feel happy. 

Today is pancake day!

 

So today I wanted to make some pancakes for Chris's breakfast. I went to my pantry confident that I had a few packets of plain flour there, waiting to be used.

Sure enough, I not only had plain flour, but self raising flour and cornflour. I always keep a spare of everything in my fridge and pantry. Just in case there's a shortage or I don't have money any pay period.

I measured the plain flour and noticed it was a little dark. So I tasted it. Bitter. So I checked the use by date. Best before July 2021. 

Flabbergasted, I checked the other flours and they all were out of date- by two years!

When covid was at its height, I remember buying extra flour and sugar so that I could at least bake something tasty when we were staying home... 

Feeling a bit guilty that I havent baked for a couple of years, I recalled that my fibromyalgia had been bad all that time, and I toasted a couple of crumpets for Chris and promised to add flour to the shopping list for next week.

He was so longing for pancakes but settled for the crumpets and tea. 

Pancakes weren't meant to be today: but next week I am sure Chris will say, "Make me some pancakes for today is pancake day!"

There'll be no divorce

 

If housework and you were married, there'd be no divorce... it would be a co-dependency relationship though.

You need a clean environment and housework needs to be done! 

The only way I could see a divorce would be if the fictitious fairy godmother were real, and cleaned for us and therefore the codependency would be over.

Housework is something that is never noticed until you don't do it, and it becomes a personal embarrassment when your lack of intimacy with it is noticed... so the desire for constant attention that housework demands is given ones full compliance in order to not be embarrassed... codependency at its best! 

Such is the grip housework has on even us chronically ill fibromites, we will appease it way beyond our comfort zone or we will pay someone to clean for us.

As long as there is a dwelling to clean, housework will partner with us and will turn up on the winning side every time. 

There's nothing like dirty house to bring out our guilt and unhappiness and the heartless housework will  unmercifully multiply its untidiness inducing a desperate response from it. After all, it doesnt care how or who does it... as long as its top dog. 

Fit or not, young or old, you do unwittingly partner with housework the minute you get a dwelling to clean... And the partnership will continue until you no longer dwell there...There'll be no divorce!